Broad research questions:

• What are young adults’ views of sharing genomic data?
• What affects successful genomic data sharing?
• How can we design genomic information technology to be most effective to support young adults’ health and personal utility?

This is an iterative, sociotechnical approach where young adults are invited to explore undertaking whole-genome sequencing (WGS) and sharing genomic data. By acting on significant factors affecting individuals’ participation in such technology, care providers can optimise individuals’ engagement with their services and mitigate against their nonparticipation. Patient participation is needed for tools that share information between them and health care professionals (HCPs) in order to support their health goals to be successful. Patients say communication with their doctor is important because it helps them rationally evaluate their treatment options, influences their health-related attitudes and satisfaction in a positive way, and supports continuity of care and self-management [1]. HCPs need to listen and engage with patients, to discuss information patients have, and reasons why this may or may not be applicable, relevant or helpful in their particular circumstances [2]. Often, implementation failure of health information technology systems is not related to the technology itself but to the lack of such socio-technical considerations [3]. Young adults are viewed in this study as key stakeholders and end users with responsibilities for their own data sharing and self-care. The starting point for design and implementation of applications is with the practices of the users since any potential benefit has to be realised through their interactions with these tools [4]. It is necessary for assessments of potential genomic technologies to address needs of individuals and their significant relations, and to also extend work practices to recognise a pathway or process towards individuals’ self-management and health goals. Future design and development must account for individuals’ aspirations, technical and cognitive constraints as well as their privacy and confidentiality. This study explores what affects patients’ desire to undertake WGS, receive results and share genomic data and information. It will include a literature review, surveys and interviews, engaging with young adults and health professionals to identify factors affecting perceived utility of undertaking WGS and views of sharing data.

References

1. Dobrzykowski, D. D., & Tarafdar, M. (2015). Understanding information exchange in healthcare operations: Evidence from hospitals and patients. Journal of Operations Management, Article in, 1–14. doi:10.1016/j.jom.2014.12.003
2. Hewitt-Taylor, J., & Bond, C. S. (2012). What e-patients want from the doctor-patient relationship: content analysis of posts on discussion boards. Journal of Medical Internet Research, 14(6), e155. doi:10.2196/jmir.2068
3. Lluch, M. (2011). Healthcare professionals’ organisational barriers to health information technologies-a literature review. International Journal of Medical Informatics, 80(12), 849–62. doi:10.1016/j.ijmedinf.2011.09.005
4. Berg, M. (1999). Patient care information systems and health care work: a sociotechnical approach. International Journal of Medical Informatics, 55(2), 87–101. doi:10.1016/S1386-5056(99)00011-8